Describe your role in the MPN community.
Ruben A. Mesa, MD, FACP
President, Enterprise Cancer Service Line
Executive Director, Atrium Health Wake Forest Baptist Comprehensive Cancer Center
Enterprise Senior Vice President, Atrium Health
Vice Dean for Cancer Programs, Wake Forest University School of Medicine
Professor of Medicine, Wake Forest University School of Medicine
In your opinion, what is the significance of Rare Disease Month/Day pertaining to MPNs?
I think having rare disease awareness elevated by a day or a month is welcomed and makes sense. There are 2 key needs. First, those with diseases that are not common, like MPNs, can find themselves isolated when diagnosed. Their disease is not discussed on TV, the news, or the View. Afflicted patients may have never heard of their disease or known anyone who had the disease, so their frame of reference can be non-existent. Rare patients, when joined together, can share insights, best places to get info, best ways for self-advocacy or advocacy at a level with insurance or health policy. The second is key needs for research in your individual disease, but also helping drive advances in research between rare diseases and knocking down barriers for progress (ease of aggregating national or international data, making trials or drug approvals easier for rare diseases).
-Ruben A. Mesa, MD, FACP